Helen’s Story

As promised here is my story to date. Obviously there will be updates from time to tim

I’m not really sure when my problems started. We were living in Wales some 250 miles away from my family when I was involved in a road accident in 1987 and hurt my back, but until after the baby was born in 1988 I was seemingly okay.  It was a troublesome pregnancy, a prolonged and mismanaged labour and I had severe post-natal depression. Any problems since then were attributed to either the spinal injury or to a recurrence of the depression.

Friends tell me that I was a changed woman after the accident and the happy-go-lucky person who always had a good word for everyone became a recluse and as likely to be in tears than in smiles. However life goes on and with a large mortgage to pay and 3 small children to bring up I did the best I could. At first I took a part-time temporary job which became a permanent full-time career after just 2 weeks. At least I was out of the house and had more to think about than back ache and laundry! My life revolved around my family and my job leaving little time to worry about my health except to have a gut feeling I was “not quite right”. My weight was increasing rapidly even though I was not eating well. I was always thirsty and could not pass a rest room without having to sample the facilities. This was a huge joke to my friends and family as I always knew where the public loo was and what it was like inside!

In 1989 I had a minor gynae operation which did not go well and made my spinal problem far worse. I declined further surgery and decided to suffer rather than risk any more problems with that surgeon at that hospital. It was the correct decision as the problem seems to have sorted itself out over time.

In 1990 my husband’s employer moved him to my home town and I was relieved to be back near my family and to be able to ask for help when I needed it. I set up my own business and did very well but knew I was still not right internally but there was nothing I could go to my primary care physician (GP) with. Trying to explain the symptoms was like trying to nail jelly to a wall. It was all very nebulous and although I did see my GP on a number of occasions I couldn’t really tell him what was the matter and I was probably labelled WFMDH. (Woman, fat, menopausal, depressed, hypochondriac)

I had a lot of work and was turning more away when I had an offer for the sale of the business and the same week an offer of a full time job as an employee with one of my major clients. The money was more than I was making in my own business with none of the hassle so I sold my client list (apart from the handful of clients who declined the transfer) and started to work for a large medical research concern.

My spine was still giving me a great deal of pain and my GP referred me to both a consultant orthopaedic surgeon and a neurologist. The surgeon ordered an MRI scan and when he had the results told me it was not an operable problem, I had osteo-arthritis in my spine. The neurologist was a darling and suggested a number of tests that my GP  may have an autoimmune disorder rather than a pure neurological problem.

The GP ordered tests for various allergies and it I was told that many of them were borderline. It was also noted my blood potassium was rather low so I was given potassium salts. My thyroid activity was normal and my GP said I was just tired from such a hectic life style and to take a relaxing holiday.

Well my spinal problem became worse and my GP suggested I consult a chiropractor. This was an expensive option and I was very surprised  when she not only manipulated my skeleton but suggested blood tests (which I had to pay for), but I was even more surprised when she got back to me to say I had tested positive for coeliac antibodies and should go on an exclusion diet immediately and she would supervise. I did this (and it wasn’t easy) and noticed a great improvement in my skin. I lost some of the weight I had gained and my energy levels rose. An added bonus was that my back pain became bearable without me taking pain killers. My GP was not impressed with the results of the private blood work for coeliac but ran his own series of tests. One came back negative, one positive and one inconclusive. I declined an endoscopic investigation as I would have had to eat what I thought was hurting me for 3 months prior to the tests. I felt pretty run down by then and my memory was starting to let me down. This became far worse over the next few years and I began to wonder if I was losing my mind.

At work I was asked to take part in a control group where a research student was measuring stress levels, hormone levels and blood pressure. As this was  non-invasive and did not involve taking any type of drug I was happy to do this. However when my blood pressure was taken I was found to be high and a note was sent to my GP to alert him.

The practise nurse took my BP and told me to come back each week to have it monitored. I did this for 2 years and my blood pressure continued to climb.  When I asked if I should be receiving treatment for this she looked rather confused and asked if the GP had told me to go back and see him. I said I had last seen him two years ago and she had been doing the monitoring since then. I made an appointment to see him there and then.

During these two years I had begun to feel very unwell. Again nothing specific but I could no longer cope with my job and after a period of sick leave I handed in my resignation. It was the wrong thing to do as I lost my
entitlement to pension and sick pay but I couldn’t cope with the pressure of work (or even getting to work) but without a diagnosis I could not get a doctor’s certificate and thus retain my entitlement to employee benefits.

When I saw my doctor I was given a script for Propranolol Hydrochloride.  Within a week I developed a rash, problems breathing and very cold hands and feet. My blood pressure was higher than ever. I stopped taking the Propanolol at once even though it said on the packet insert I should consult my doctor before I did this. When I did manage to get a surgery appointment my GP went spare with me. I told him what had happened and he said I should have gone to ER at the local hospital to have everything verified if I couldn’t get in to see him. I said I would not take the tablets again, ever.  I had a bad reaction and they were doing more harm than good. He then prescribed Amlopidine Besylate. I started to take this. Three days after I started the drug I started to itch. I can’t describe the itch – I wanted to tear my skin off. It was dreadful. My husband phoned the GP to be told it was my blood vessels reacting to the drug and I was being over-dramatic, and to keep taking the tablets. By Christmas Eve I was in an awful state. I had scratched so much that I was bleeding and had large areas with no skin. My eyes were so swollen I couldn’t see and all my mucosa were covered with blisters.

We called the doctor’s office. He had gone on holiday but the stand in doctor came out to see me. This man probably saved my life that day. He took one look at me, asked for the tablets I was taking and took them away. He rang the local hospital but they were full and didn’t have a specialist
burns unit in any case. He phoned his advice number then he gave instructions to my husband and said he would call in several times a day. I was too ill to go to any other hospital.

By mid-January I was starting to grow new skin and the blisters were popping. I went back to the surgery. My own doctor was still on holiday so I saw the locum again who said he was way out of his depth and asked for an appointment at the regional immunology unit some 20 miles away. The appointment came in mid-February.

Before then I caught a nasty chest infection and had to go and see my GP. He was very annoyed that I had been sent to see a specialist behind his back and tried to cancel the referral. He and I had a blazing row in front of a waiting room full of other patients and he told me he would remove me from his list. He did not treat the chest infection but gave me another blood pressure medication which I didn’t even bother to collect from the pharmacy.

I went for my hospital appointment. By now I was feeling more myself and able to give some details of how I felt during the episode although I did not remember any of it in detail. The immunologist took a lot of blood tests and also took my blood pressure which was 220/150 by this time. She was horrified and said I had to return later that month. I went home.

The very next day I had a call from the hospital to go back. I was told that there were problems with my blood tests. They had shown positive for a great number of antibodies but of much more concern was I was in potassium crisis. Strangely I was feeling pretty good at that time. The immunologist had arranged for me to be admitted to a major hospital the following week. I was unable to go the following week as one of my children had her University Entrance Examination that week and I had to be there with her as she was only 16. (She passed and is the youngest student in the University). I was admitted to hospital the following month.

My potassium levels were brought up to almost normal using both Sand-K and a drip and I was sent home to get over the bruising.

My husband’s employer then moved him to Scotland so not only did I have my health to worry about but also had a house to sell and packing to do. I registered with a new family doctor but elected to remain at the same hospital. We sold the house and moved at the end of May 2002. I went back into hospital the first week in June.

I then met the most wonderful man (second to my husband) who took one look at me and “knew” what was wrong. He said he needed to do quite a number of tests to eliminate other causes but I had an endocrine problem of long standing. When I spoke to him he listened and smiled. He said what I was describing was very typical but that my spinal problem and allergy problem were confusing the non-endocrinologists. He let me use his office and library to read all about it as he said I would have a Swiss cheese memory.  I was so relieved that I hadn’t lost all of my mind. I was also relieved that I hadn’t imagined it all! Almost any diagnosis is a relief when you have been told for years that it is all in your mind or you are exaggerating. I started to take spironolactone which I reacted to quite well once the dosage was established. I needed 200gm a day and was okay with the drug except for menstrual irregularities. I was constantly bleeding but I knew this was a short term stop gap so determined to put up with the nuisance.

The next 3 months I spent more nights in a hospital bed than I did in my own bed. I was having blood taken as fast as I could make it and my waste products were also taken away for examination (now that is beyond the call of duty!) My renin levels were non-existent and my aldesterone levels between 7 and 8 times normal levels. The preliminary diagnosis of Conn’s Syndrome seemed to be confirmed. I then went for a CT scan. At that point there was a crisis.

Because it was feared I would react to the contrast dye used during the scan I was given an anti-histamine. I had a severe allergic reaction to this and went into a full SJS (Stevens-Johnson Syndrome) episode. I remember nothing of this but my son and daughter were there and this is what they say happened. Within minutes of taking the anti-histamine (orally) I became flushed and hot started to drink lots of water. My children alerted the nursing staff who contacted the crash team. I then started to itch and a
rash appeared on my face, arms, legs and then the rest of my body. I stopped breathing and became violent. My son and daughter restrained me and sat on my arms and legs so the medical teams could get me breathing again without being hit, kicked or bitten. I came out of the reaction coma only 2 hours later, very upset and emotional. The wonderful endocrinologist and the immunologist had both stayed with me through the crisis (I found that out later) and had kept me alive between them.

Later that day I went down for my CT scan. No contrast dye was given “just in case” and we didn’t know if the scan would show anything.

Luckily the scan was very clear and showed a rather large tumour on the left adrenal gland. The right gland looked normal. I went home at the end of the week.

Then I had a full two weeks at home and went back into hospital ready for an adrenalectomy. When I got to hospital it was found my blood pressure was too high for safe surgery. However I did get to meet the surgeon who was very clear and honest about the operation, how I would feel afterwards and the chances of success. He also told me that I would need a team of surgeons and the operation was rare so another specialist surgeon would come from another major hospital to assist. He also asked if I would consent to having the procedure filmed (for doctor training) and if I would allow student doctors to watch the operation. I agreed to all this and was told I could change my mind about this at any time. I then went home again to relax and try to bring my blood pressure down.

I went back to hospital at the end of September 2002. My blood pressure was still higher than we would have liked but the tumour had grown a measurable amount and could new be both felt and seen on abdominal examination. Both the surgeon and the endocrinologist spoke to me about the dangers of both operating and not operating, it was up to me to decide if we should risk the surgery at that point. I felt I had all the facts when I made the choice to go ahead and I was admitted on the 2nd October 2002.
I underwent surgery on the 3rd October. I elected not to have a pre-med as I was concerned about adverse reaction to this. This meant I was able to walk into theatre and say “hello” to the camera crew and the student audience. I felt like a person and not just “the adrenal”. There was also concern I would react to the anaesthetic and I did have a mild reaction to this. An adrenalectomy is a major procedure and I was in theatre for 4 hours. By the 5th October I was out of ICU and back on the women’s surgical ward. I was home by the 8th October.It is now 23rd October and I feel pretty good all things considered. I am enthusiastic again. My skin is clearing and I am no longer constantly menstruating. I know that my stamina will increase. I also know I should take things easy for some time yet. I will find out in mid-November if the
tumour was benign or not. By the Christmas we will have a good idea of how successful the operation was and if my remaining adrenal gland will be able to cope. I have been told it will be at least a year before my hormone levels are fully stable once more.

Early December 2002

The surgery was a successful as far as the surgeon is concerned. I also lost part of my left kidney and my most of my spleen. The tumour was not malignant but there were pre-cancerous cells within the left kidney. As the whole suspect area was excised I need no further treatment.

However about three weeks after the surgery I began to feel “off colour” and blood tests showed my potassium levels were above normal at 5.2. Two weeks later the levels were 5.5 and I had developed a strange rash on my face. I also started to fall asleep in the afternoons with great regularity.

An emergency admission to hospital followed and it was found my right adrenal gland is only working at between 70 and 80% efficiency. Time may correct this but until then I just have to soldier on as the artificial hormones that would replace the hormones I am not making would further depress the adrenal activity.

I also have a constant runny nose which I am suggesting is due to having no spleen. The spleen is part of the defence against infection so I suppose I am going to catch every cough, cold and sniffle this winter.

Late February 2004

It is now 17 months since my surgery and things have settled to a new normality.

I went back to work 12 months ago and have done well enough to receive a promotion to almost the level I was when I became ill. That will give me chance to update my qualifications (which I was forced to allow to lapse during my illness) and once I’ve renewed I’ll be able to make my mind up where I am going from there.

My memory is patchy with some things remembered very clearly and others completely blank. I look at reports I’ve written and have no recollection of ever seeing them before yet I can remember conversations and repeat them back almost word for word. Quite strange.

My blood pressure varies quite a bit with stability for months and then a couple of weeks of high readings before it settles down again. My regular check-ups haven’t happened as we moved to a new area shortly before my                                                                                                                                                                                                                                                                                                                                                                                                                                         surgery. My new local hospital can’t push the blood samples through their labs within the time frame necessary and there is talk of me being transferred to Edinburgh for check-ups. As yet nothing has come of that and I have a feeling my case will just get quietly dropped unless something goes pear-shaped.

My weight has continued to increase and I must try to lose some of the excess this next summer. 

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